There are a number of symptoms that come and go with lupus similar to the seasons but without a doubt the worst and most prevalent symptom is fatigue. Even the word fatigue is lacking energy to express the overwhelming invasion of exhaustion and I would think of a better word but I’m just too fatigued. Energy has become my most valuable resource and I accept the fact that I will never have the same amount that I used to but if I “plug the holes” where my energy is escaping than maybe I can have more to do the things that really matter. I’m all about being energy efficient like we are with our homes because loss of energy is expensive and has long term repercussions. Here is the thing though…I’ve become a bit narcotic when it comes to saving energy or using it wisely only I don’t think I’m being narcotic. I think I am being smart and adapting to a life that no longer revolves around the mantra, “I’ll sleep when I’m dead.” Everyone pushes themselves way too hard today and people with lupus are just more sensitive.
However, I know those around me even if they know me very well think I’m being a bit ridiculous. For instance I have a laundry sorter so that when I do the laundry I save energy because all the colors are already separated. It’s one less thing I have to do. It’s less bending, throwing, sorting, yada-yada-yada. I really get on my boyfriend’s case about throwing his dirty clothes in the right bin and he will do it for a while then stop and I’ll have to have “the talk” again. I know he knows I’m tired but no one can understand the extent to which every little task that you never thought of before now becomes labor intensive. How can you be tired from that? That is when I usually reply, “how often do you do the laundry when you have the flu or for that matter how often do you do anything when you’re sick.” I know even if I’m not doing as much as I would like it’s still amazing that I’m not lying down in bed all day. Every day I’m up is a small victory even if no one else recognizes it. I know I’m not being lazy or complaining without due cause. I know my intensity to have a well-run house helps me in the long run, but it’s hard to always get the help I need because others don’t always see the point.
I’m in the process of making my whole home and life energy efficient. IT NEEDS TO HAPPEN SO I’M NOT EXHAUSTED ALL THE TIME.
Maybe we just think we’re out of spoons (spoon theory) when in reality we just have misplaced them. This is the new philosophy I’m embracing and so far it’s been working. I’ve reorganized my whole kitchen so that heavy things or less used items are on the bottom cabinets and everyday items are more accessible. Again, I never thought about these things before but bending is something I try to eliminate because of my hips and knees. I’m striving for a minimalist lifestyle. If I can find even one or two more “spoons” by getting rid of clutter whether that is physical or emotional things than it’s worth it. If you’re trying to be energy efficient too let me know how it works for you or I can share some more of my energy saving tips. It’s not impossible to gain more energy but it’s a process. I think you just really, really, have to think of how you spend your time and where are the energy leaks. Personally, I don’t have anyone else to really help me except my boyfriend and I know if I had friends or family then maybe I wouldn’t have to be so narcotic about “little things.” But for a lot of us that don’t have a ton of physical support or if we were the primary support providers before then I think it’s really important to change how energy is managed now. I can’t afford to have my energy depleted!